Daughter has a PWS isolated on her upper left eyelid along with a small PWS on her nose.

I am wondering who to believe when I read contradicting evidence on SWS/Glaucoma when eyelid is involved.

VBF site says the following: "Various experts’ report that nearly 50% of all infants diagnosed with a port wine stain on the eyelid will be at risk for glaucoma. Involvement of the upper eyelid has the highest association with SWS"

While the largest study to date on the subject says the following: "All patients with eye or CNS involvement had lesions on the eyelids; 91% of these had both upper and lower eyelid involvement, whereas 9% had only lower eyelid involvement. None with upper eyelid involvement alone had eye or CNS involvement"

Either way I want our daughter screened for glaucoma and SWS but cannot seem to get any help in my area. Can anyone recommend a SWS specialist in Ontario Canada? Our daughter is 6 weeks old.

The problem with studies associated with these syndromes is that the syndromes are so very rare, it's really difficult to find enough people to test!!

Could you post a link to that study or tell me where I can find it? I'd love to read that and I don't think I've stumbled across it yet. I'd really like to send it to Glenda and see if she knows about it.

In the meantime, though... what has your pediatrician said regarding glaucoma screening? It's not like a screening for glaucoma is expensive or invasive... it's annoying, yes. We're all supposed to get our eyes checked anyway. What is the objection?

The problem with studies associated with these syndromes is that the syndromes are so very rare, it's really difficult to find enough people to test!!

Could you post a link to that study or tell me where I can find it? I'd love to read that and I don't think I've stumbled across it yet. I'd really like to send it to Glenda and see if she knows about it.

In the meantime, though... what has your pediatrician said regarding glaucoma screening? It's not like a screening for glaucoma is expensive or invasive... it's annoying, yes. We're all supposed to get our eyes checked anyway. What is the objection?

Our pediatrician and family physician both said it was a harmless vascular birthmark that should go away with time. I'm assuming they mean salmon patch but it sure looks like PWS to me (dark red). I would really like an expert to diagnose it as PWS or salmon patch since it is such a sensitive area regarding SWS and glaucoma.

Here are some pics of our little angel. Birthmark is on the left eyelid (right eye in picture) and red dot on the nose as well. The second picture was took in sunlight which brings out the red color better.

Thank you so much Missy. I don't have a good photo right now and will try to take one and send to Dr. Nelson later. But what do you think the one XROX posted. My son has the same mark and on the same spot only smaller. Sometimes it looks faint and sometimes it's red.

Two doctors in the hospital where my baby was delivered said it's just a stork bite that will go away in 1 or 2 years. Our pediatrician said the same thing. He didn't even want to refer us to the dermotologist. We are in Canada and cannot see the specialist without a reference from our family doctor. And even if he would refer us, it will take almost half a year to get to see the specialist. That's why I was upset.

Anyways, if you could let me know what do you think of XROX's photo, that would be very helpful for me.

yes consult the expert ! its so faint. wow. an dark in the light ? huh.

i have a small pws corner of my left eye. left eye is slightly weaker but no problems. need polarize sunglasses thats all.

Thnaks Kaykay. If it's ok, can you tell me if yours PSW is on the eyelid or on the face? and is this small one the only PSW you have? My baby is just one month old and i don't know much about the birthmark. I hope you can understand my question. Thanks.

Mission Statement:
An international charitable
organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment,
provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance
for individuals with birthmarks.

DISCLAIMER
Information accessed through the VBF is presented in summary form
in order to impart general information relating to the diagnosis
and treatment of vascular birthmarks. Such information is not complete
and should not be used as a substitute for a consultation or visit
with your physician or other health care provider. Information accessed
through VBF website is not exhaustive and does not cover every aspect
of vascular birthmarks. VBF makes no warranty as to the information's
completeness, reliability or accuracy. Should you have any health
care related questions regarding this matter, please see your physician
or other health care provider promptly.

Information accessed through the VBF website is provided "AS
IS" and without warranty, express or implied. All implied warranties
of merchantability and fitness for a particular use or purpose are
hereby excluded. VBF shall not be liable under any theory or indemnity.
In no event shall VBF be liable for any damages, direct or indirect,
and all other damages, direct or indirect, special, incidental,
consequential or punitive, are hereby excluded even if VBF has been
advised of the possibility of such damages.